[SingleMama2B]

Good Afternoon All....

I just wanted to post this for adoptive parents of children that are meds for ADD and ADHD.

Most of you know, that my DD has been diagnosed (at the age of 9, and home 13 months) with FAS (Fetal Alcohol Sysdrome) with Microcephaly and ADHD. The Pediatric Neurologist perscribed Focalin XR 5 ml. DD had an EEG on Monday, and I asked the neurologist - with the FDA Warning coming out on ADD and ADHD drugs and children - should DD stay on the med, and should she have an EKG (since the warnings are about circulortory problems. The doctor said it would be "over-kill" but go ahead and have it done.

Here, 3 days later, I get a call from the Neurologist today, saying that my DD needs a "Cardio Clearence" to be on these meds. He spoke with the pharmacutical company, and they suggest it for children on the meds. as the cases that prompted this 'warning' may have been with underlying heart conditions that no one knew about. AND with a VERY LIMITED medical history, not to take a chance and have it done!!!!

I just wanted to let everyone know.... am waiting on a call back from the hosiptal for the appointment for DD!

[Jim_in_PA]

This is related to recent studies that show an elevated chance for cardiac problems with the drugs commonly used for treatment of ADHD. Ae doctor just interviewed on NPR indicated that it was more of an issue for adults than children; however, there may be warnings placed on the containers as a result of the study. .Treatment of adults, especially older adults, for ADHD using these same drugs has been on a rise. There is indication that some children are also affected...hence the testing.

[SingleMama2B]

Hi Jim.... Yes, this is what I read and was told by the Ped. Neurologist. Alot of the cases referred to where children! DD's Neurologist thought that my 'concern' initially (on Monday) was alittle 'over-kill', but 3 days later and speaking with the pharmecutical company, it is HIGHLY suggested to get 'cardio-clearence' for children. Being adoptive parent(s), and us not knowing ALOT of family Medical history.... this is a good idea! Even with DD on the lowest dose, he wants her tested ASAP!

[Kasey]

Just adding to this, since this is basically what I do for a living, basically the FDA advisory committee voted narrowly to recommend that a "black box warning" be place on the package insert of these meds: (amphetamines, such as Adderall, and methylphenidates, sold as Ritalin, Concerta, Methylin and Metadate), the FDA is not required to follow the committee's recommendations, but they usually do, so the warning would be sent to doctors and companies would be required to re-do their package inserts to place this warning on there.
The analysis of the reports of death and injury of the medications submitted to the companies and then onto the FDA suggests a possible link between the drugs and cardiovascular problems, especially in those with pre-existing conditions. The link was not conclusive.

To hopefully make you feel a little safer, stimulants are one of the most studied medications in children and adolescents (thousands of children participating) and these stimulants have been used and studied for over 60 years! There have been around 20 deaths in the past 5 years, but it wasn't clear what other factors were involved (medications, medical conditions, etc..)
Obviously parents need to weigh the problems and long term issues caused by ADD or ADHD against possible side effects or serious effects of the medication. Always discuss concerns with your doctor and always report anything unusual when your child is taking a medication and you can also report it to the company or directly to the FDA yourself, this is how info is gathered once a drug has been marketed, this is how info is continually gathered and new effects are learned.
Follow your docs guidelines, but if you don't feel right, don't hesitate to seek out a second opinion or alternative treatments.

[SingleMama2B]

Kris.... great insight.... thanks for posting. I am getting DD's heart tested as soon as possible to make sure! I always lean to the cautious side. I just wanted to bring this conversation up to the other parents that visit here so they can maybe get more information and make a decision too.

Thanks again Kris...... A in NJ

[Abdulina]

I'm VERY familiar with all kinds of stimulants and antipsychotic drugs. With FAS kids very few have been proven effective. The one on all the boards that seems to help almost all FAS kids immensely is Risperdal. It is like a goldmine find! My two sons started it in January and I can't tell you enough the change in their lives and ours as a family. Incredible. Now, we are adding Focalin to our older son's regimen for focusing and appetite control. I pick it up tonight actually. We could not survive without them. Risperdal has almost literally NO side effects for any kids. Only a rare one that happens once in a blue moon. Now, with any ADHD stimulant, you ARE definitely going to have a fast heart rate. That's a given. However, these drugs are really safe. ONly reason pharmaceutical company would even say that is to CYA. Your neurologist checking your daughter out I'm sure is highly qualified to dispense the drugs. Better to be safe than sorry I know. I will warn you though, it takes a long time for some kids to find the right dosage and/or the right drug for them. With Max, it took us months to find the right combo. Don't get fustrated with that part of it. When Max went on STraterra, pure evil came out. Called the neurologist immediately and said either you take him off of it or put me on something--LOL.

Definitely trust your neurologist and develop a relationship with him/her. It will be long term and will make a difference with schooling. Are you a member of any of hte yahoo FAS sites? I can give you some if you aren't. My oldest FASer is 13. And she is just becoming a handful. We are in for a long haul and it definitely helps to talk to others who've been there. I wish you all the best. You will most likely find medication to be a lifesaver to your daughter and you as well. When on medication, the true child you always knew was in there comes out somehow and for the first time, you relax and enjoy your child fully with no fears of the condition they have. good luck to you.

Take care,